In Their Own Words – All You Need is Love

I guess she is just depressed because her overbearing sister steals all of the attention. That’s why she doesn’t smile, run, play and laugh like a normal toddler. If I plan to home-school this child I have got to figure out why she hates to practice her ABCs and manuscript. She doesn’t care if she gets a sticker or not. I know she knows how to do it; she is just refusing. Her head is down in her arms on the table. Is it really possible for a 3-year-old to be this stubborn? She won’t even come out for a cookie!

My mom used to get motion sickness; maybe that’s why my daughter gets sick every time we get in the car. But why does she spin herself in circles in the backyard for what seems to be hours at a time without even getting dizzy? That just doesn’t make sense. It is strangely funny and weird that she likes to throw herself backwards on the floor over and over and over again as her father and I sit and watch completely bewildered and entertained at the same time. What two-year-old does that?

“I did. I asked the doctor again. She said it’s just her personality,” I tell her father.

Why won’t she get dressed? There is no reason for her to be so difficult about getting dressed. Just put on the jeans and shirt with the cute little design and let’s go already! I am going to be late to work again! She’s four years old. Her sister has been dressing herself and changing numerous times a day, much to my dismay, on her own since she was at least two. What is the problem? This child doesn’t seem to want to wear anything except pajamas or sweat suits. She can’t wear sweat suits everyday.

How did she get that math problem? She’s not even in school yet. Was she even listening to us? She was in the other room. She just blurted out the answer like it was nothing to her.

Why is she overreacting? I am just brushing her hair. I am being so gentle. It would look so cute if she would just let me put this pony tail in.

I read an article on autism. Eva doesn’t have autism. It is an interesting subject though. I’ll read it and think that thankfully my child does not have autism!

Okay, she’s five. It’s time to learn to ride a bike. Oh my goodness, she’s going to hurt herself if I let go. Why can’t she get this?

Look both ways when crossing the street. Hold my hand when we walk in the parking lot. You have to watch where you are going. Stay close to me. Be aware of your surroundings. Don’t wander in the store. Now I understand why parents have leashes for their kids. I have to physically have a hold on my child or she will disappear. Don’t talk to strangers. Yes, the store clerk is still a stranger. Please don’t tell everyone we meet such personal family information. It is a good thing I don’t get embarrassed easily. Just smile, take her hand so you don’t lose her and walk away.

Big girls take showers, not baths. What is the problem? Why is she crying? Outright refusal. It has been twenty minutes and she still hasn’t turned the shower on. I don’t even take that long of a shower. It has been an hour since she got in. Okay, she’s finally done. Did you wash your hair? It’s not even wet. What were you doing in there for an hour? Okay, you have to get back in. More crying. I will come in with you and wash your hair for you.

I justify my actions. “I do not spoil her! How outrageous! No, I don’t make excuses for her!” I know, although I can’t understand it, she cannot do it by herself. So I do it for her.

Back to the doctors. It’s a different doctor and this time, I insist. “There is something wrong. She is seven. She cannot ride a bike. She would trip over a blade of grass. She’s awkward.” She has my compliant daughter do a few minor gross motor activities and tells me she is not where she thinks she should be and sends us to a physical therapist that does some more in-depth testing with her and finalizes that she has Sensory Processing Disorder. Phew! That explains it! That’s why she won’t wear jeans. That’s why she hates showers. That’s why she begs for back rubs. That’s why she falls so much. Eva spends a year in physical and occupational therapy. I notice most of the other children in therapy definitely have autism, yet I brush off the thought once again.

Two years later we are doing homework. I’m sitting right next to her, keeping her on track the whole way and trying to be patient. I am explaining everything in a way she can understand.

“Wow! Did she just re-write that entire paragraph word for word after only reading it once? I can’t do that. I’m going to Google that.” And so I do because I am so intrigued. Every site it takes me to mentions autism.

At the age of nine, I take her to see a neurologist. I am convinced there is more to my child’s strange and intermittent brilliance, odd ways and sensory issues. How can I understand her? How can I help her, and how can I have a relationship with my child if I don’t know what is going on inside that mind of hers? After a few checklists and hour-long sessions of questions regarding Eva’s social interaction and behavior and we have a diagnosis! Asperger’s Syndrome. Tears form, but they are tears of relief. The relief of finally knowing.

For nine years, her father has insisted that something was just not right. When he suggested autism to me a few years back I told him I was on top of it. She had sensory issues, but I knew. My gut and my instincts told me daily that she just was not “normal.” I wanted to believe her doctor. It is just her carefree personality. So she’s different? She’s just innocent and naïve. That can be a good thing, right?

When I called her father to tell him about the diagnosis, he responded, “I told you. No one ever listens to me. She is to stay in a normal classroom. She is not stupid. I think she’s a genius. Do you hear me? Don’t let them dump her off.” I promise him that I won’t. I read every piece of information I can find on Asperger’s Syndrome and high functioning autism and I am convinced he knew because he had it, too.

My daughter is now going to be 11 years old. She is possibly the coolest person I know. She attends a regular school, is in a regular classroom and is on the honor roll. Her teachers, therapists and IEP team are extremely cooperative and proactive. She is in several social skills groups and she takes showers now. She has friends, attends sleepovers and although not gracefully, she rides a bike, dances and roller skates. She makes us laugh and makes us wonder. She thinks life is a bowl of cherries. She doesn’t sweat the small stuff. She is patient, faithful and so forgiving. She is forgiving of the world for not always understanding and not always being so kind. Forgiving of my ignorance at what she is talking about sometimes. Forgiving of the ever-confusing way us atypicals go about things. Eva continues to be kind though, to everyone she meets. She is incapable of being mean or malicious or untrue.

“All you need is love, mom” were the words of my three-year-old-Beatles-fan daughter who has Asperger’s Syndrome.

This “In Their Own Words” essay is written by Launa M. Taylor of Willoughby, Ohio.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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Ah, my darling daughter “wasn’t caught by the spectrum” till we read an article when she was 11, and then took forever to convince the necessary people…this, my darling whom hated (and still hates the car), was always a little wobbly around others, spatial problems…but could throw a mean baseball or basketball, as long as she wasn’t moving…She loved baths, till her shots at almost 5, then hated them, sensory problems worsened, she “forgot” left and right”, how to count past 5 and c-a-t spells cat was the last new thing she seemed to learn till she was 11, she suddenly stopped wearing her cute outfits, and overlayered,,,noise started to bother her…she is ambidextrous now…but comprehension is a real problem…she is considered grownup at 21, but in so many ways is young and innocent for herself, she’s seen what happens to others around her and is sometimes a real good advocate and advisor to them..Carol